Friday evening- scope update

Emma Kate went into the OR yesterday afternoon for her exams and we've got some answers- sort of. The GI scoping went well, there wasn't anything abnormal found, so biopsies were taken to be sure, and we should hear back from those first of the week. There was a little submucosal bleeding in her stomach that he said was typical for vomiting, nothing to be concerned about, sort of like bruising. So for now it looks like unless the biopsies show something crazy, we're just looking at gagging and vomiting due to mucous secretions and hard coughing. The bronchoscopy showed that there were little granulomas (?) on either side of her vocal cords, likely due to all this time with the ET in place. They say that should resolve with time. The patch site looks much the same, not fully collapsed but "squished" and now there is a little bit of granulation tissue on the surface of it. They have switched her from Pulmicort to nebulized Ciprodex to help address that. They did see some secretions down there and they did suction what they had access to. So the final word was that she will need another surgery- the slide will fix the issues and actually leave her with an airway slightly larger than a normal kid her size would have. Ideally we would wait a few more months before going in again, but since she is having issues with coughing and vomiting, they feel it will need to be done sooner rather than waiting. We don't want her to be on TPN long term while we wait, if she's not able to breathe comfortably enough to eat well, or if she is vomiting too much to maintain herself. Dr. Rutter will be back in the country on Monday I believe, and we're deferring to him to decide the time frame we're looking at. So, while we're sad to hear that she does indeed need another surgery, we're relieved that they feel so positive about what her outcome will be, and also that it seems to be a pretty clear-cut decision.

She's doing great by the way- she can walk independently now, just needing someone right near by for balance support when needed. We've enjoyed riding around the pod in a wagon, and she's walked the area several times as well! She did have some increased breathing effort and rate this morning, we suspect that she had some inflammation due to the procedures yesterday, and some inhaled epinephrine and IV steroids really helped- she's almost back to where she was prior to going into the OR yesterday.

Gretta, Daddy, and Santa

Gretta and Daddy got their picture taken with Santa at the Ronald McDonald House. I know santa looks a little "under the weather" but I'm pretty sure he wasn't.

Pics from Ohio

This is Emma and Aunt Stephanie in the PICU. Aunt Stephanie was so excited to get to watch videos with Emma but Emma decided she wanted a nap instead. Good snuggling all the same!

Here are the girls in bed enjoying some "Gretta" time. As always, Emma was happy to hold her sister.

This is also from Emma's room. We have a little play area where she can be by her monitors and IV pumps and still kind of walk around with assistance.
A belated picture from Uncle Ryan and Aunt Stephanie's visit.

Wednesday afternoon

Uncle Maffis (Matthew) came into Cincy to help out for a few days, and Emma Kate has warmed up to him very fast. We've had a lot of fun playing with toys and dolls, and watching NEMO! We're still working on stimulating her appetite- this morning she ate pretty well, a few tablespoons of grits and yogurt, and some Boost drink. She did (unfortunately) throw up yesterday evening right after she had taken in a good drink of Boost- she got upset when Mommy left, and the combination of being worked up, crying, and coughing led to another vomiting episode. Poor little thing. So she was *again* right at the 36 hour mark since the last "episode." She had been without any feeding tube for that 36 hours, but since she was unable to take in enough food and Boost to show that she would even come close to meeding her dietary needs, they decided to place another NG tube today. It was far more traumatic than the last several placements, and she was so upset when it was done, then she just passed out asleep. She's slept for about 2 1/2 hours now, which is a great afternoon nap. We might have to start waking her up soon... They have started her enteral feeds back up again with Pediasure, just starting at 5ml/hour and increasing slowly. Unfortunately she'll be cut off at midnight since she will be going under anesthesia tomorrow for scoping of her airway and upper GI system to see if there is any explanation for the vomiting.

Ok, I have to laugh because I typed all that in a couple hours ago, and in that short time things have changed. She was getting a fairly good start on some early dinner when she managed to vomit the freshly-placed NG tube out her mouth again. I've lost track of how many we've gone through now. Argh. This is awful. Hopefully we can find a cause and a solution in the OR tomorrow, or everything will be normal there and we can give the girl some time to get up on her feeds and be self-sustaining without a tube. I have a sneaking suspicion we will continue to deal with vomiting regardless, when she coughs or even sneezes. I guess we just have to wait and see what tomorrow brings.

On a separate note, Mommy and Daddy got much-needed haircuts today, and Mommy finally chopped it all off to donate to Locks of Love again! :)

Monday evening

Well, we've had yet another issue with feeding... Emma Kate has managed to gag out her third feeding tube. This was the second NJ tube they had placed in two or three days, and it didn't last more than probably 18 hours (actually she started to cough it out her nose overnight but it was salvaged that time...). So.... she's back up to full rates on her TPN (again) and we are waiting for a GI consult (still). Hopefully GI will evaluate her tomorrow at the latest and we can figure out how to proceed- the girl needs more in her belly instead of in her veins! She did pretty well today with some mac and cheese and applesauce, and she chugged on some water too, But they don't think she can take in enough yet to sustain her energy needs and hydration.

She was transferred to the "complex airway" unit where the nurses routinely deal with airway issues. The room is nice and spacious, with enough room on the floor for a nice play mat- it's much better than trying to play in the bed all day! Emma Kate is getting stronger and stronger again, and she's just being held back by her IV lines! She's having a blast playing with her My Little Ponies and other toys, and watching Elmo videos. She is one of only two kids currently in the unit, so she gets a lot of attention!

The plan for now is to get the GI consult tomorrow regarding the vomiting issue and how to feed her, and she is scheduled to get a bronchoscopy on Thursday to see where we stand. Dr. Rutter still won't be back in the country till the following week, but one of his associates will be doing the exam.

Sunday evening

Well, Emma Kate seems to be doing great! She has been very active and talking lately, playing and laughing hard! She had a visit from PT today and was standing up playing with toys on a chair, she needed help with balance, but otherwise was standing very strong on her own. She also was evaluated by the speech pathologist and was given the go-ahead for purees and honey thick liquids again, so we'll keep making progress on her eating hopefully. She did get a new feeding tube placed NJ today, and she was a total champ for it! Everyone there said time and again that she was pretty much the best patient they had ever had back there! She did so well. We had a lot of fun tonight and I started to wonder if we were making too much noise in the PICU... luckily our nurse said that you can't really hear anything outside the room... :) She's off the oxygen completely now, and they've started feeds back as well as moved on with her drug taper. I think we've finally gotten down enough on the drugs that the real Emma Kate is coming through again!! It's a wonderful thing to see! :D

Uncle Ryan and Gretta

Here is uncle Ryan helping Gretta relax at the Ronald McDonald House in Cincinnati. Many, many thanks to him and aunt Stephanie!

MERRY CHRISTMAS!!!

So here we are, having Christmas in Cincinatti, and unable to be together as a family... but we're thrilled to be sitting where we are! Gretta probably won't remember it anyway... :) We've been generously given gifts for the girls through RMH, and we even got two big bags of gifts for us last night too- lots of toiletries, some gloves, a picture album, puzzle books, and a *bunch* of other stuff. They also included 2 disposable cameras, which is a good thing since we won't have our camera here for another few days until it arrives in the mail, so we'll be able to take some Christmas pictures! Guess we won't be able to share them though, since they're on film instead of digital... Again, I'm just floored by the amount of generosity through RMH.

Emma Kate had a good day yesterday, she even had a nap in the afternoon and then was awake for the evening hours, falling asleep around 9:30 or so. She slept through the night (sounds like she just awoke enough to open her eyes and look around before falling asleep again), and is still asleep at a little past 10am today. Hopefully this time around we'll have an easier time with awake/asleep times. I'm tempted to wake her up and get Christmas going! (Gretta even said it was ok for Emma Kate to open her gifts for her this morning...)

Not a lot of excitement plan-wise, I think we're just working on weaning her off the nasal canula today (she is down to 5L 30% now) and increasing her enteral feeding so that we can start to back off of the TPN. They're also talking about switching her back to oral meeds as well, instead of IV. Hopefully her little belly will tolerate everything and get things going ok.

A few successes

So we got the intubation tube removed yesterday around 11:00 am and today we are still doing ok. She is a noisy breather and has desaturated for short periods of time while crying (usually less than 20 seconds) and recovers on her own. The first few times, we did supplemental blow-by to assist just in case but after awhile, we discovered she didn't need it. Today, she got a feeding tube placed in her jejunum which is past where the other tube was so hopefully she won't have vomiting problems again. She should be getting her IJ line removed today when a doctor is available. She did fairly well overnight sleeping for an hour or two and then being awake for an hour. She was pretty quiet when she woke up just looking at daddy. One time she had a good dream and laughed out loud. She also has bad dreams where she cries quietly and unfortunately desaturates. She is sitting up in bed right now putting her blood pressure cuff on mommies arm and playing some toys on her bed. Gretta is getting loving from Aunt Stephanie and Uncle Ryan in the Ronald McDonald House across the street. Daddy just met with the crew working today at Station 19 in Cincinnati and will try and slip over for dinner with them tonight. Roanoke County Local 3194 representatives came up yesterday and visited for awhile with our family. It was nice to see familiar faces again. We appreciate all of the support. Please know that we will try and express our thanks when we see everyone next but it will not come close to how we have been touched by all of the thoughts and help.

Thursday morning

Here's a picture of Emma Kate's private jet- she's moved up in the world in the last two months... :) This is how she and Daddy got up to Cincinatti so fast.

Emma Kate has done pretty well in recent days- they are getting less and less out of her ET tube, and she has been relatively awake and calm. She looks around a lot and sometimes you can tell what she is saying even with the tube in- like yesterday I asked her if she needed a new diaper (I already knew she did...) and she mouthed "no." She has been silly about her diapers since all this started, and she usually says no if we ask her if she needs it. She's watching a fish tank on the TV (comes complete with bubbling noises), and her uncle Ryan got her a big sparkling snowman snow globe and little Brittany chipmunk doll- she loves them both! I wonder what that snow globe looks like when she's had Ketamine...

There have been a few fevers off and on, and nothing had been conclusive on the cause until her last respiratory culture that was taken the other day grew Moraxella. Apparently it's a common respiratory bug in kids and can cause ear infections too. Fortunately she was already on several antibiotics (Vanc, Zosyn, and Gentamycin) that are total overkill for that bug. Today they switched her to Rocephin. We're still dealing with some diarrhea issues, and we've just gotten the 3rd stool culture necessary to rule out C. difficile. Hopefully it's just all the drugs and antibiotics she's been on. They've been giving her Lactobacillus to try to help things a bit.

She's been doing well with the NAVA device on the ventilator, her peak pressures have been in the teens for a day or two now, and she has been doing well getting rid of CO2. Her blood pressure has been pretty stable lately except when we had her really really comfy and it just dropped a little below the acceptable range. It has not required any further medication to maintain it since they were stopped a few days ago.

The nurses have been getting less and less out of her ET, as far as secretions go, and she at one point was able to cough well enough to move secretions up into her ET where we could actually see them. The ENT folks came in yesterday evening and did a quick bedside scope through the tube and said they didn't see much in the way of significant secretions. Hopefully things are really settling down in there. There may have been some confusion about whether they were all the way to the carina or if they were right where the pig bronchus branches off- it can be pretty misleading in there!

Last night at midnight she was started on Propofol and her fentanyl and versed drips were stopped. She's had enough time to get the drugs out of her system now, and we're hoping to attempt extubation here in just a few minutes. We're very anxious to see how she does without the tube in- hopefully she will do well enough to just stay on positive pressure nasal canula O2 and won't require reintubation.

Gretta has been a night owl lately, with two nights starting at about 11pm... yesterday we decided to get bedtime going early and be serious about it, and she got to sleep shortly after 9pm. I hopped in the shower, and she must have known I was enjoying a nice steam bath because she decided to wake up screaming shortly before I was done! Luckily she settled back down and went to sleep again easily. She continues to develop her little personality every day and is really engaging lately. She smiles a lot and makes some pretty funny faces. She's got everyone at RMH fooled- they have no idea what the pterodactyl is capable of! We're working on setting up a wellness check for her here at the hospital since she's coming up on 2 months already. I can't wait to see how much she weighs- she's a chunky monkey.

Calendar for visits

As we get close to starting the third month of hospitalization with Emma Kate, we are incredibly thankful for all of the support we have received from family and friends- this has been an incredibly difficult journey, but without the support we have received, it would have been near impossible to get this far. We have been asked by many family and friends to offer ways they can help us, and we do have a need- the people who have been helping us so far are unable to continue or are running out of time off from work. If anyone has some time they can offer to us here in Cincinatti, it would be a huge help. Because of the seasonal illness restrictions at the hospital, Gretta stays at RMH during the day with one person, and we typically have Greg stay the night with Emma Kate at the hospital. In order to allow Greg to get some sleep in the day and for Robyn to be able to spend some time with Emma Kate at the hospital, an extra person is really essential. A second extra person is a huge bonus! I'm putting up a calendar link in the upper left corner of the blog so everyone can see the dates we have help and where it is needed. If you have some time to offer, please get in touch with either Greg or Robyn through email (gsazonov@roanokecountyva.gov or roavery@vt.edu). The room at RMH has a second double bed, and you'll have all the wonderful food and flat screen TVs you could possibly want! Thanks to everyone for their love and support, hopefully we can get this little girl on the mend and up and running soon!!!!

Address here at RMH

Our address at Ronald McDonald House is
Ronald McDonald House of Cincinnati
Attn: Greg and Robyn Sazonov, RM 51
350 Erkenbrecher Avenue
Cincinnati, OH 45229

The website to this house is www.rmhcincinnati.org

You can always use our cells to reach us but remember we are working different schedules than you might be so email is best. We thank everyone again for all of the support that we have been given. I can't begin to tell you what a relief it was to get into the RM House. We were being chased throughout the hospital by staff who didn't want to hear Gretta cry or didn't understand what it is like to have a nursing baby. The RM House director allowed us in a day early than a room was available just to let us use the common areas to walk with our girl, change her diaper, feed her, and keep her out of the hospital.
Gretta is smiling a lot now at us and saying "ah-goo" and sticking her tongue out when we do it to her. She continues to be our big pumpkin and we and she appreciate her Aunt Stephanie taking such good care of her while Robyn visits with Emma.
Emma had an alright night with two fevers that went away fairly quickly though they are not sure what is causing those. She had sedation issues this morning. It is so hard watching her cry and mouth "mama" over her tube. I tried to soothe her as best I could until they got more and different sedation into her. Uncle Ryan got her a toy she can hold on to. She really clamps on to your finger when you give it to her. I tell myself it is her having poor control of her muscles and not her being scared to death because I don't want to think about the latter.
She is back on the NAVA and so far doing ok. We haven't had good success in the past week with attempting extubation but we're all hopeful the next time will work. We'll let you know how it goes! Give your family members hugs!

Ronald McDonald House

We're in! They've given us room 51 here and we are so thankful! Robyn will post the address here in a little while.

Monday morning

Well, we're here in Cincinatti, Greg flew in with Emma Kate and Mimi drove up with me and Gretta. It was a long night for everyone, with much anticipation. Emma Kate arrived and got settled in, they really felt like she was doing very well and had good hopes of getting her turned around. I've lost a bit of the progression due to things getting a bit crazy and the hospital internet won't allow posting here, on facebook, or on email, so I haven't documented much yet.

They have a new device here called NAVA which uses a probe inserted into the esophagus down to the diaphragm and senses the nerve impusles from the brain that initiate a breath. This signals the ventilator to help in the breath, instead of the vent working on it's own timing and throwing in random breaths that Emma Kate didn't ask for. They said that a lot of kids who have trouble tolerating the vent like she has do much better with this. They put it in, and she seemed to tolerate it well, especially when she was heavily sedated still but initiating breaths. Sunday most of the issues were having her either "in a coma or doing cartwheels" as the attending doc put it. Every time she gets light and starts waking up the littlest bit, she starts huffing and puffing, really working hard to exhale every time. They were worried that she was spending so much time on exhalation that she may not have sufficient time to inhale, and there are also worries about some air trapping, although her O2 sats and CO2 numbers didn't seem too worrisome.

Sunday evening there was a bit of excitement, she was running a fever. She had gotten a low grade fever at Wake the day before we left, but without any other supporting signs for infection, no antibiotics were started. She was up around 103, so they went ahead and pulled blood cultures, respiratory cultures, and a blood panel. They really don't have an indication of exactly where the infection is. The secretions they're getting from her airway are thin and white, and are getting less and less, and her Xray today looked even better than it did yesterday, so who knows. We should be getting results today for the culture and RSV testing that was done at Wake. So, last night after I left, a lot happened, and I was updated by phone throughout the night. I might have missed some details or not have things exactly right. Sounds like she had another episode of desaturation, that they worked on her and resolved it. She started having issues with poor perfusion to her extremities and her blood pressure was all over the place, so with that and the fever, they deemed her "septic shock" and started her on IV fluids and epinephrine and milrinone. They've gotten her back on antibiotics, I believe vancomycin and gentamycin, maybe one other I can't recall, and they have added Fentanyl back on board for sedation/pain. They are stopping her feeds since her intestines are not likely to work well in this state and having the epinephrine on board, so I think they are starting TPN (IV nutrition). Did I mention they placed a central IJ catheter? They also put in an arterial line so they can have constant BP measurements as well as do arterial blood gas testing. They are planning on removing her NG tube and placing a NJ tube that goes from her nose to her jejunum (farther down into her intestine than before). Then they can feed her through that when she starts working her intestines right again. There were issues with abdominal distention again, and an ultrasound showed ileus, where her intestines are basically not moving much. She did start to have a little diarrhea last night too, so they're doing more testing to make sure she's not working on an intestinal infection. When I came in this morning, she was sedate and appeared stable, but she looks exactly like she did right out of surgery, just as many pumps and meds and tubes and lines, minus the fresh incision of course. This feels like multiple steps backwards from having her at home with just a tube in her nose, and having her up and active, talking, and eating a little.

Today they were successful in getting a PICC line placed (finally, THANK GOD), and it sounds like we're sort of just riding the day out. They don't want to change much since she had such an eventful night. I think they were going to try to stop the epi since she has stabilized and her BP has been reasonable for her state again. Other than that, we're hoping for a quiet , uneventful day.

We're having issues with our daily arrangements- it's much more difficult here than it was at Wake. Greg's brother, Ryan, and his wife Stephanie have come up to help us out for a little while, and we managed to get a room at the Kingsgate Mariott thanks to Greg's sister Heather getting us an amazing rate. We were spending the weekend with Gretta in the PICU waiting room, and someone in with Emma Kate at all times, (they won't allow more than 2 people in her room at a time, and due to seasonal illness restrictions, they won't let Gretta in either) but now today they told us Gretta couldn't even stay in the waiting room. No one has been able to find us a place to camp out for the day with Gretta, other than a lactation room, which wasn't really all that suitable anyway. I was prepared to just set up camp in the cafeteria if I had to. The Ronald McDonald house here is enormous, but it is full. We've been calling in 2 or 3 times a day to see if anyone has moved out, and they're hoping they might have some people leave to go home for Christmas. After finding out that we weren't going to be able to deal with Gretta at the hospital, the social worker did some magic and got the RMH to allow us over to use the common areas even though we don't have a room. It's literally across the street from the hospital, so Gretta can stay over here with someone and I can run back and forth as I am needed. This place is twice as big as the one we stayed in at Wake, and they are so helpful and supportive. This is an awesome solution for us until we actually have a room here, so I feel much better about it all. They're even offering us their kitchen as well- they have 3 meals served daily, as well as access to tons of dry goods, dairy, and leftovers from other meals. The generosity is just unreal.

I've been asked about an address we can be reached at, and I'm not sure right now, since we're sort of in limbo, but we have been told that we can receive things through the mail by having it sent to the hospital in Emma Kate's name. They said not to put a room number because it changes with her status of course. So for now, it's Emma Sazonov, Cincinatti Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, Ohio 45229-3039. I don't guess we can receive anything at RMH until we technically have a room here...

I'll try to keep updating daily as I can get access... Please send your thoughts and prayers for our precious little girl.

Heading to Cincinnatti

So it's official, we're going to transfer to Cincinnatti Childrens' Hospital. Daddy will fly with Emma Kate and a transport team to the hospital and Mimi will drive with me and Gretta. We'll likely get set up in an extended stay hotel there, since the Ronald McDonald house is full at the moment. I'm thinking we might end up staying there for the forseeable future, to be close to the hospital for any emergencies that come up, and to be right at hand for reevaluations. We'll have to work on orchestrating help to stay with me and the girls when Greg has to go back for work, but we will figure it all out in time.

Saturday morning

Wow. There's a lot to catch up on. Here's the short version- Wednesday morning she was gagging and had her TP tube come out her mouth, so we had to pull it out. We spent the whole day "wasting time" trying to find someone locally who could put the thing back in (the hospital had told us when it comes out to just call our pediatrician or go to the ED... yeah right.) and around 5pm when we realized it wasn't happening (and along with concerns about her breathing rate and effort getting worse) we headed for NC. She was having issues with her O2 saturation declining as well, and when we got to the ED they put her on blow-by O2 which brought her sats back up to good numbers. We were admitted that night and by the following morning the blow-by wasn't cutting it any more. They put her on a nasal cannula and that helped. Thursday afternoon they took her down to scope her and see what the problem was. Apparently when they started to put her under, her O2 sats dropped dramatically and they had to bag her for several minutes before she started breathing again and oxygenating better. During the scoping they found some thicker mucous, but nothing else. No crusts or casts, and the patch still looks like it did before- it is open but compressed. It is not completely collapsing at rest. They thought it was just mucous she hadn't been able to clear, and they suctioned it out. They said that below the patch, the mainstem bronchi were clear. She was not stable enough afterwards to allow extubation, so she returned to the PICU intubated again. Each time they let her get light, she breathes really hard and gets agitated, so they keep delaying extubation. On Friday she was having more trouble exhaling, so the pulmonologist came to scope her in the room. He didn't find any more significant secretions to remove. Just a couple hours later, she suddenly had no breath sounds in her chest and her O2 saturation dropped into the 40s before they were able to get things going again. They think she may have mobilized a bit of mucous and it was obstructing her. This morning she's holding steady and they're getting better-looking frothy white secretions out rather than the slightly tan more opaque stuff they were getting yesterday. They had swabbed her to test for respiratory infection but it will be a few days before we get the results. They did do some testing from the mucous they got out in the OR and the gram stain showed 1+ gram positive rods and 1+ white blood cells. The culture has not grown anything. She has not yet been put on any antibiotics. We feel like she has taken a big step back and are getting more and more worried. We're hoping to talk to her doctors today about the potential for transferring her to Cincinnatti where Dr. Rutter is, since he would be the one to do a revision surgery if it is indicated. We'll try to keep updating now that we have our computer with us.

Monday afternoon

Emma Kate did well overnight, but had another mysterious vomiting episode after phenergan and before her methadone dose. These are becoming more than just a nuisance as she is at such a high risk for complications from aspirating such nastiness. We've got a call in to the GI doc at Wake Forest to get his take on this, since today is the 3rd day from discharge and none of the 3 meds he prescribed seem to be solving the problem. She's still doing great otherwise- she is still hard to keep up with, but she definitely still has weakness and tires easily. She has to breathe so fast just being awake and still or moving a little bit, it takes a lot of effort for her.

We had a busy morning- our appointment with her pediatrician was at 9:40 this morning, and it took quite a bit of effort to get everyone ready and out the door, taking several meds with us for the road. We had a long visit with the doctor, going over all the meds, what the plan is, and what she is doing. He had a hard time appreciating her lung sounds because she was making so much noise sitting there. He judged by her brightness and activity level that she was doing well, and reinforced strongly the importance of not letting her get sick, and the risk of aspiration. I talked to him about nursing, and having one more doctor stress to me the potential serious complications she could have if she aspriates *anything,* I have decided to take the hard road and not allow any more nursing until she is deemed safe by a swallow study. As time passes until then, hopefully she will also have time to allow more healing and stabilization of her airway, and this will hopefully decrease the risk at least a little bit. It's hard to deny her, and I already miss the cuddling, but it's a small price to pay to increase the chances that we pull through this without any more glitches...

Emma ate a little bit of breakfast and had some yogurt at lunch, with a few tiny bites of sweet potato. She gets tired very quickly when she is eating or swallowing, so we're trying to take it easy on her. I'm surprised she doesn't have more of an appetite, since her feeds get cut off at 5am and don't start again until she falls asleep around 2 or 3pm, you'd think she'd be hungry and wanting meals and snacks, but she's not quite there yet. I'm just glad she's showing some interest and having a few tastes. Hopefully she'll continue to come around for us.

On the way home, Mommy got a flu shot (and now has a really sore shoulder...), so now we're all working on our immunity. Luckily there's not a lot of it going around here yet, so hopefully we'll be well prepared if it does. It's incredibly cold and windy here today, and tomorrow is much of the same, so we're not too disappointed that we're cooped up inside these days.

We're HOME!!!

I can't believe we finally get to post this- WE ARE HOME!!!! After a bit of a hectic exit from the hospital, we made the trip home somewhat uneventfully. I had grown so accustomed to our setup in NC that it felt like a major change to leave. There are so many people who we are incredibly grateful for, and so many of them missed our goodbyes. Most of the PICU nurses (who were truly instrumental in Emma Kate's survival) did come by her room on the floor at least once to see her awake and active (well, several of them saw her passed out asleep... but the ones who saw her awake were just in amazement and overjoyed to see her), but many of the doctors who oversaw her care those terrifying several weeks didn't get quite the thanks I would have liked to have given; of course we thanked everyone profusely when their shifts were over, including the doctors... but I really wanted to thank everyone again and give big bear hugs to them when we finally reached the end of our stay there and Emma Kate was doing so well. I did get a chance to give big hugs to her CT surgeon Dr. Ungerlider, and his fellow, Dr. Otaki (who is Japanese and more than a little caught off guard by my hug...). I know we'll likely be back frequently over the next several months, or maybe years, I have no clue, and I hope we will get a chance to thank everyone again and let them see Emma Kate at her best when she is strong and breathing easier and quieter down the road.

We had really moved in down there and packing up was quite an ordeal- thankfully we had our car as well as Nana's car, and both were packed to the gills with everything we had acquired while we were down there, including a pretty darn impressive pharmacy. Emma Kate was asleep when we left, and we strapped her right in her car seat- thankfully Gretta decided this was one of very few times she would just go right to sleep in the car, despite being somewhat overdue for nursing. After a little while on the road, it was time to give some meds to Emma Kate- we actually had her feed pump running in the car and had planned ahead what drugs we needed to be prepared to give to keep her on schedule. She was supposed to get her Methadone, and sure enough, she must have known, because as soon as I hooked it up to the port on her feeding tube (I seriously had given 0.1ml of the 10 she was due) she started retching. Luckily she only vomited a tiny little bit, but I felt so bad for her. We dosed her with Phenegran and nervously gave the Methadone with no further incident. Other than that, (and one stop along the way to nurse Gretta) the trip home was uneventful, thank goodness.

We arrived home and set Emma Kate up on our bed so she would have plenty of room to stretch out and roll around- she had previously been sleeping in her crib, but there is no way we could possibly get her in and out asleep, or medicate her, with the mattress down at a safe level. Besides having her take up pretty much the whole bed, it's a decent arrangement. We're keeping someone with her at all times to make sure she is safe and that she doesn't pull her TP tube out or get tangled in her feeding line. We're still dealing with random vomiting issues mostly when she is asleep, and it really seems unrelated to meds. She once vomited 15 minutes after her Phenegran (the anti-nausea drug) and today she just vomited after an hour and a half had passed since her last med. I just hate it for her, what an awful feeling. And lord knows we can't have her aspirating any of that nastiness...

It's quite terrifying to have her here at home to manage ourselves... She's on so much medication, there's hardly a time that we're not pushing something through that tube. She breathes so loudly you can hear her downstairs, although she is moving air very well in her lungs. She continues to improve her strength and balance- now she is able to walk on her own sometimes and just needs someone hovering over her in case she stumbles or loses her balance. She's so glad to be home, with her kitties, Dixie, and all her familiar toys, but I think the best thing is that it is QUIET here, and there aren't a bunch of strangers constantly barging in wanting to do things to her any more. She's not yet back to her normal self- I'm sure it will be weeks of weaning these drugs before we have our girl back for real, but there are a lot of things coming back for her. The biggest unusual thing is that she really does act like a 2 year old now at times, and that combined with a lack of coordination makes for an interesting day. I love that she still likes to give the kitties kisses, and she is loving helping with Gretta. She even helped "wash" dishes in the sink and did a little food prep with Daddy too.

Emma Kate got a good thorough bath this morning and poor baby Gretta is overdue for one herself. It was nice to wash some of that hospital smell off of her and get her into some comfy clothes instead of always wearing her PJs, although there's certainly nothing wrong with that! :D We're working on getting a little food and (thickened) drink into Emma Kate, which has turned out to be quite challenging. She's had a little breakfast but isn't terribly interested in much more still. Although it still bothers me that she sleeps as much as she does (usually from about 2pm until 5 or 6am), I can't complain too much because it gives the rest of us a much needed break- it is HARD to keep up with this little girl! It's truly exhausting! Hopefully as the drugs continue to taper down, she'll not only be more like her usual self, but she will also be awake more during the afternoon.

We came home to some really cold weather, and snow still on the ground. You can always tell it's been windy because the snow gets blown away from the house in some areas and piled up in others. We have been generously given a lot of progress on the addition while we have been gone- it only needs a few more steps before we'll be ready to open it up to the existing house. And we just found out today that the church up the road has several members who want to help us out- they will be bringing hot meals for dinner for us through this next week, which is a huge help!! Not having to worry about taking time to plan or cook meals is huge!

Friday afternoon

Well, more frustrations abound. Still trouble with this whole vomiting thing. She vomited twice overnight. Seems like it's just stomach juices, no feeds in it, and we don't think any meds were lost last night. It just doesn't make a whole lot of sense. We did get to meet with a GI doctor this morning for a consultation, and he had several suggestions but not one single clear answer to explain it all away. He's thinking it could be nausea related to the methadone, delayed gastric emptying, or stomach irritation. So.......... we have more drugs. Geez! She's now being switched from protonics to prevacid, and we're adding sucralfate as a protectant, and phenegran as an anti-nausea drug. We'll see what happens. He didn't seem overly concerned about the situation and felt like she did have quite a bit of gas in her intestines which explains the slight abdominal distention. She doesn't seem uncomfortable, and she's still very slightly interested in eating food- she has a few bites of a couple things for breakfast, and now we are trying soft solid foods like cereals and crackers, and some veggies. Hopefully her appetite will increase since we're still cutting her feeds off from about 5am till 2 or 3pm.

Our other little worry now is a low-grade fever overnight. She got some tylenol and the temp came down to normal again, but who knows the significance of that little fever. Her ENT doctor checked her out again this morning and said her lungs sound perfect. There is just a lot of noise probably due mostly to the patch, but there could also be a component in her larynx/pharynx area that is still causing air turbulence too. He does want us to continue doing the nebulizer treatments with pulmicort just in an effort to keep a little bit of steroid going down where we worry about the formation of granulation tissue.

Emma Kate has been really bright and active all morning and just started to slow down a little after 2, still fighting a nap though. Before she could get too far along, we got her a flu shot- she was such a champ! She didn't even cry, it was over SOOOO fast, and she got a great princess band aid for it. She liked pulling up her pants and showing it off!

For some reason Gretta seems to be a little more fussy today and harder to make her happy... she has been "snacking" often and attempts at putting her down in the swing or the bouncer chair once she's fallen asleep pretty much always fail! On the upside though, her baby acne is nearly finished and she's got some beautiful baby skin coming through now! Her poor little chin is still very irritated (likely due to the fact that she's nearly always over someone's shoulder or sleeping on someone's chest... the girl has a hard life you know), but it seems to be getting better with a little bit of lanolin a few times a day.

Here are some recent pictures to enjoy! (In somewhat reverse order from how they happened)

Emma Kate is a big fan of baby Gretta- she was a little more excited to sit with Gretta in her lap than is portrayed in the picture... :)

Playing with Cree the therapy dog out in the hallway, Emma Kate got quite good at throwing the ball for her
Emma Kate admiring Cree's santa suit
Helping Mommy change baby Gretta's diaper, she is such a good little helper!
And baby Gretta, such a cutie!
Emma's "magic ball tent" Mimi found for her. As you can probably tell, we have quite moved in to the hospital room and made it our own. We have to pad underneath it a lot because Emma Kate has yet to figure out how hard the floor is- she keeps plopping her head down and going CLUNK! This morning she was pushing on the back wall of the tent with her head and managed to bonk her head on the floor *just past* where we had it padded up. It must have broken tiny little capillaries in her forehead because it left an exact impression of the tent fabric there... :P
One of Emma Kate's all-time favorites- watching "Babies" on netflix!

Thursday evening

As we have learned very well, this experience is and will continue to be a bit of a roller coaster. Here we are at Thursday evening, and very little has been done (tangibly) to prepare for possible discharge. Overall Emma Kate is doing very well, especially impressing the PT/OT folks. She can walk holding one hand, and occasionally can go a little distance unassisted. She still has a lot of work to do on her balance- she will often lose her balance a little bit and overcorrect, sometimes nearly falling back or forwards if someone hadn't been there to catch her. She remains a bit wall-eyed, which seems to have significant effect on her hand-eye coordination. She's nearly got her voice back, and she has seriously expanded her vocabulary since she has been extubated. Everyone continues to be pleased with her respiratory situation, but it's hard for us since she still makes as much noise as she did the morning that she went into the OR the first time. She's not distressed about it at all and continues to have O2 saturation in the 90's, but she can be quite loud at times, even when asleep (where before she was silent when asleep).

She had another swallow study this morning- despite our best efforts to plan ahead and do it early in the day when she is typically awake, she went to radiology about 45 minutes after a dose of ativan, and she was not a willing participant, to put it lightly. We couldn't hardly get the straps on her to keep her safely in the seat. She managed to get a couple small sips of honey-thick, and did fine for those. We moved on to nectar-thick, and she took a couple small sips- she had silent aspiration. She tried thin liquids to get a sort of baseline (and maybe because I told her I allowed her to nurse a couple times), and she actually did fine on those (no aspiration) but it was only a couple little sips again. The whole exam was probably somewhat inconclusive because of her agitation and because we didn't really get significant swallows of large enough amounts down. I don't know... the speech pathologist felt comfortable telling us that she can have honey-thick liquids, and still no one will say definitively if I would be taking too much of a risk to allow any nursing. She still suggests that I feed Gretta or pump first so that there is not a lot of volume available, but she won't say it's ok, for the record. I've managed to fend her off today, although it is so incredibly hard- she wants the "mih" so much. She even got a little upset seeing Gretta nurse and kept pointing to herself and saying "Emma!" I will try thickened milk in a cup for her, but that still totally defeats the comfort aspect of it.

So, we're going home with a TP tube in place. (When we actually *go* home) She will be on night feedings through the tube to ensure she is getting enough calories and fluids, and she will be allowed to eat during the day. We have to start with foods that are easy to chew and safe to swallow, and try to monitor for fatigue. The biggest obstacle will be keeping that tube in her nose and not allowing her to pull it.

We're still having some issues with her vomiting... it's just been in the last couple of days (naturally...). First we thought it was related to large volumes being pushed in, or the rate that things were pushed. Then we thought it was coughing to the point of gagging and vomiting. Then we thought it was cold temperatures stimulating her gag reflex as liquids were pushed through the tube through her pharynx. Then we thought it was something related to the syrup/dye in the methadone. Then it happened with her ativan. It's just bizarre to me, and no one seems able to give a reason this is happening in so many differing situations. It's literally like under a minute following the meds going in (even when they're pushed *slowly*) she starts getting quiet, she starts to retch, and she vomits. Sometimes we can tell there's medicine in it, and sometimes it's impossible to know. It's incredibly hard to tell how much comes up. Aside from the frustration of it, the risk of aspiration each time, and the stress/discomfort it causes her, there's the difficulty in figuring out how (if at all) to redose the meds she got before throwing up. We don't want to overdose her (since the goal is to taper the drugs down), but we also don't want her to suddenly have less instead of the safer gradual taper. No one has a real good answer for us.

So here we sit, nearly 5pm on Thursday and it's hard to tell exactly what steps, if any, have been taken towards discharge. I know we'll be hooked up with a home care company to provide what she needs for her tube feedings, and the pharmacy here is going to attempt to dispense all the medications we will need for an unaltered tapering schedule, but we have no idea when we'll be expected to return for what testing. It sounds like the next time we come down to see her ENT doctor, we'll repeat a swallow study and see if she's safe to move on to thinner liquids. Oh, and they did do a cardiac ultrasound yesterday that apparently was fine (second-hand report). I'm so anxious to get home, but the prospect of being home and so far from all that we've grown comfortable with is very intimidating. I mentioned the idea of renting a furnished apartment down here for a few months... I'm more than half serious even...

When we do eventually return home, we will be in isolation-mode. We'll have to limit visitation to just the people who will be in and out to help us- we need to get at least a few months out without allowing Emma Kate to pick up any illnesses... in cold and flu season. We'll have a little at-home family Christmas more than likely, and will be limiting travel to back and forth visits to Winston-Salem for rechecks. We really appreciate everyone's support and willingness to help out, and we hope everyone understands our need to be overly diligent at protecting Emma Kate from exposure to potential illness during this time.

Therapy dog

Emma has stepped away for a moment to throw the ball with Cree the therapy dog! We'll put up pictures soon I'm sure!

Tuesday evening

Emma Kate slept pretty much the whole day yesterday and had a few hours spread through the night that she was awake. She was up around 7 this morning and ready to go again- she's so much fun in the mornings, she's very active and playful, and nearly back to the regular Emma Kate at that time. She's able to walk just having one hand held, although she still wobbles a little bit, she's doing great. She's trying to climb up onto the little sofa thing in the room and the high chair as well. She is LOVING seeing the helicopters come and go- the pad is out in front of our side of the hospital, and we can always hear them coming. She's learning a few new words now actually, and is getting better about saying "please" which is great. When she starts to get tired, she definitely gets noticeably crankier (I swear we didn't bring a "2 year old" to the hospital, but it seems we'll be leaving with one...) and she can really whine with her voice being so hoarse... but honestly we're just enjoying all of it right now and are grateful to have it to deal with at all.

The speech pathologist came by again today and Emma Kate took some yogurt, applesauce, and thickened apple juice. She did really well, consuming almost 2oz of the juice without any outward signs of problems. The speech pathologist even let me nurse Emma Kate while she was there, and she did great. She did choke once but it was related to her breaking her latch a little bit I think. She has been begging to nurse for a few days, as it is a huge comfort thing for her. We're planning on doing another swallow study Thursday or Friday, hopefully we can schedule it early in the day when she'll actually be awake and rearing to eat. I have a feeling they're being extra cautious because her condition is so unique, but I hate the thought of holding her back longer than necessary.

We met with the pharmacist this morning and agreed to a slightly less conservative taper schedule for her methadone and ativan- instead of reducing one or the other every 3 days, we're going to do it every 2 days for a week or so and see how she tolerates it. If she does well, we'll try reducing one or the other every day so that each drug is reduced every 2 days. It's hard to anticipate how she'll respond- the methadone has such a long onset time and lasts in the body for a while, so we have to give enough time to allow her to show us if the reduction is too fast and we need to back off at any time.

Gretta has done really well, and is holding her head up when we carry her! It still wobbles around some when she tries to move it, but she can hold it really steady in one place. She's got a sad little chapped chin from all the time spent over everyone's shoulders, we're trying to keep some lanolin on it, but the cold windy weather doesn't help either! Luckily she only gets outside when we're going to or from the car in the morning and at night. It actually snowed here a few days ago, and this morning it was only 25 degrees out!

Monday evening

Emma Kate had a decent night, up a little and asleep a little. Sounds like she was awake and ready to go around 5am, had a few bites at breakfast, and was very active with us for a while- walking around the room with us, playing on the floor in her pop-up tent toy, and watching the helicopters come and go. She went to sleep around 11:30 this morning, and now at 8:15, she is still asleep. We're going to test to see how long she will go without us trying to get her riled up- I've finally had a little time to do some research on methadone, and it scares me to think how much Emma Kate is getting. We're worried that some of the signs we're seeing (ataxia, lack of hand-eye coordination, small pupils, and sleepiness) may be signs that she's on too much. We've got to talk with the attending doctor in the morning and also consult with the pharmacologist about it and see if we might be able to taper the drug more aggressively to get her down to a more reasonable level. There are different ways of looking at it, but we're sort of thinking like one of the PICU doctors did when we were reducing her fentanyl and versed- instead of being really conservative and doing it really slowly, putting more drugs in her body, and prolonging things, his view was to get her off the drips more rapidly and let her "declare herself" as needing them back. Either way it's a bit scary, but I hate the thought of her being on these huge doses (10mg of methadone and 9mg of ativan both 4 times a day!) if they are not necessarily needed. Just need to talk to a few people and figure out if we can do better for her. So.... not much to report for today, since she's been asleep for most of it!

Sunday afternoon

Things are still going well here- Emma Kate finally got her last IV out of her arm this morning! We hadn't needed it since leaving the PICU, it was there sort of as an emergency backup, and we're so glad to get it out of her arm! Now she's just down to the TP tube for feeding and giving medications, which is probably a lot more annoying to her than the IV was, actually... she can't stand that thing and claws at it a lot, I'm so paranoid she's going to pull it out again! Argh. They've changed her feeding routine now- starting last night they switched her to a higher calorie formula (I think it's actually Boost Kid's Essentials, like from the grocery store!), and they're cutting it off from 5am-noon in order to try to increase her appetite for breakfast and lunch. They're also adding some water several times a day since she's getting less total fed now. The new plan seems to have worked today- she woke up at about 7am (she actually slept for several consecutive hours overnight), and was very interested in eating! She had oatmeal, pureed cheesy eggs, and yogurt. Not a ton of it, but significantly more than she's eaten since being here! She's taking a little tiny bit of juice or water on a sponge to help wet her mouth, but we're still waiting to get approved for thickened liquids or plain liquids. They cut her rispirdol dose back last night and I think we're going to go ahead and stop giving that one- we haven't seen anything concerning since reducing it or removing the clonidine patch, so that's all good. She's got a lot of her personality coming through again finally, and is talking more each day. This morning she actually was very affectionate with our nursing assistant and had fun searching through all the various items in her scrubs pocket.

Emma Kate's ENT doctor got to see her this morning in full action- he was very pleased! He was relieved to hear she has been able to cough and some of the noise decreases after coughing. He feels like this is the best he has seen her so far, and she wasn't sleeping! If things continue to go well, they think we'll probably start talking about getting discharged sometime Wed-Fri this week.

Here are some pictures, and keep scrolling down to find a few videos of her activities!

More PT time

Another feeding attempt, using the spoon on her own
Toys are great dexterity practice!
Emma Kate loves her little baby sister! She's pointing to Gretta's little button nose
She likes those little kicky feet too!
Reading Goldilocks with Mimi
I guess the O2 hose (for humidity) is almost as good as a regular toy...
Cleaning up after some good avocado!
Riding the Winny the Pooh train!

Emma Kate walking!

Emma Kate, up and about!

Saturday evening

We've had a good couple of days here, Friday's big excitement was a spa day for the girls! Both Emma Kate and Gretta got good thorough baths and head scrubs followed by a nice rub-down with lotion. (Gretta in particular was in desperate need!) Emma Kate got another visit from the speech pathologist and was given several sips of thickened apple juice and she did really well with it- we sort of expected that she would be evaluated again with the baruim swallow, but nothing was mentioned, and now apparently not much happens in that department on the weekends... so I assume we're waiting until Monday for further evaluation. She's done well especially eating some oatmeal in the mornings, other than that she'll take a little taste of applesauce, pudding, or yogurt. She doesn't have too much of an appetite since they're providing her nutrition through her TP tube, so we're going to switch her to a higher calorie formula and cut it off from 5am till noon each day. This way she's still meeting her caloric needs but maybe she'll feel hungry for breakfast and lunch. We've got to get her eating significant amounts before we can pull the tube, and the sooner the better- it's driving her crazy, and we're so paranoid it's going to get snagged by a little finger again!

Emma Kate is doing great with her physical therapy- she's walking better and better, still needing assistance, and we're trying to work on her balance and coordination. It seems she's not yet focusing on things, as she has a hard time grabbing items sometimes, and her eyes don't quite match up yet... she's a little wall-eyed still.

Today her sleep was broken up every few hours by some good awake time so we're hoping we're moving in the right direction for figuring out night vs daytime. Her clonidine patch was removed today and we're going to start reducing or just stop the rispirdol.

We've got some great videos to post, but we're having trouble getting them to load... we'll keep trying!

Thursday afternoon

Well, we have been moved to a regular room! We'll be here for the rest of our stay here at the hospital. It's so much better in here- they will allow less monitoring wires and such, the room is bigger and has a solid door to close, and we have our own bathroom and shower! :) Emma Kate was checked this morning by the speech pathologist again and did great with applesauce and some honey-thickened apple juice, so we arranged for a swallow study. We just got back to the room now having completed the swallow study, and she is cleared to start on pureed foods! She did a great job, the pathologist was really happy with how she did, especially considering that she is really sleepy and groggy. She did not pass on the honey-thickened liquids since on her very last swallow she aspirated a teeeeny tiny bit and didn't cough in response to it. So we'll give her another day or two and reassess for thickened liquids. It did just occur to me though, that ever since she has been on solid foods we have always noticed that when she drinks a lot of fluid she tends to get raspy sounding, and she never coughed because of it. On occasion she would sneeze when she was raspy like that, and the raspiness would completely go away... I wonder if she's always had a somewhat reduced cough reflex and some of the noise we've gotten so accustomed to hearing was fluid rattling around in there... guess we'll have to remember to bring that up with the speech pathologist tomorrow.

Also, this morning Gretta got in to see the pediatrician for her 1mo checkup- she is my monster baby!!! She currently weighs 10lbs 2oz (in the 75-90th percentile) and is 22 1/4in long (in the 90th percentile). She has gained just under a pound a week so far! We just can't believe it... The clothes we bought her just a couple weeks ago are quickly becoming outgrown already! And I'm sad to say she's just barely fitting in her newborn cloth diapers at this point... I just can't grasp the idea that our two girls are so incredibly different!!!

Thursday morning

Well, I think by the sound of it Emma Kate had a decent night- I haven't gotten the full update from Mimi or Daddy... I was able to get Gretta out of the house without waking Mimi, and I'm here in the room where Daddy has Emma Kate asleep on top of him in the chair. Sounds like she may have slept a good portion of the night with some awake time too- he did mention that she spent some time going through the massive amount of mail we've got to catch up on.

I wanted to post a few pictures here just to show the progression over the last month or so. I wasn't sure how I would feel about these pictures, didn't want to have to relive it all. But it really is a testament to how far this little girl has come in a month's time, and how strong she is.

First, some pictures of Gretta, the poor girl has been severely neglected in the area of exposure to camera flashes for the first month of her life!

So here's where the road started- this is 10/31/10, the afternoon that Mimi and PopPop were going to be heading home after Gretta's birth and visiting for a few days. We were taking family pictures in the living room. Emma Kate was a little raspier than normal, but acting completely normal otherwise... a couple hours after this picture was taken, we were driving to the ER scared out of our minds about what was going to happen...

Here we are on our first day in the Intermediate care ward after finally leaving the PICU, Emma Kate has gotten so much stronger in just a few days after extubation
We put Gretta in the crib to change her diaper, and Emma Kate leaned in for one of her special "kisses," it was so sweet.
Here's Emma Kate doing the Itsy Bitsy Spider with Lara, her physical therapist
And standing and walking! She still needs a lot of assistance but is getting stronger and stronger by the day!

Wednesday evening

Well, a lot to update again, we've been busy and unable to sit at the computer! Tuesday was a momentous day, we moved out of the PICU into a room in Intermediate Care, which is quieter and we can actually make the room dark at night! We're hoping this will really help a lot with the whole delirium issue... Emma Kate has done so well recently- she is doing awesome at her physical therapy and was walking with assistance today! She is very very wobbly and weak still, but she tries to get up and wants to move around. She's getting better at throwing a ball- she was having issues getting her hands to actually release the ball previously. Her neck and back are getting so strong again, and she can sit up in bed and on a bench mostly unassisted now. She has a lot of fun with the physical therapist, they sing songs and do the hand motions with the songs, in addition to strength and stretching exercises. She's done well with her breathing so far, she still makes a lot of noise, but it seems to come and go. On occasion she will cough (we so wish she would do it more often to clear her airway) and she'll sound nearly silent for a few minutes before starting to get loud again.

Her voice is coming back little by little, very hoarse and can be hard to to understand sometimes, but some things are really coming back. She's still somewhat reluctant to answer some questions, but this morning she was doing so well and talking a lot! She was evaluated by a speech pathologist Tuesday afternoon to judge her readiness to take food/liquids by mouth, and she was concerned about all the "wet" noises in the back of her throat, which didn't really change significantly after having a taste of pudding and a couple teeny tiny sips of water, but she wanted to give her another day to see if she would get a little better.

Our biggest hurdle at the moment is sleep issues. For pretty much all day Monday and Tuesday, the poor girl did not sleep. She had maybe a handful of 45-60 minute naps through the two days, and when she is awake, she is sort of wired. It was so sad, she was literally falling asleep sitting up- even during physical therapy the other day, she just slows down what she is doing, tilts her head, closes her eyes, and sits for about 20 seconds, then it's like she's awake again and wired. When she was awake it was like she was in constant motion, "washing" her hands and fidgeting with blankets and things. Some behaviors are totally normal for her, but they are very exaggerated now. We're expecting a lot of this is due to the huge amounts of drugs she was on and is still getting to some extent. Every day seems to be a little better than the last. Today she was just to the point of exhaustion after her PT session and after about 30 minutes of cuddling with me she finally fell asleep a little after noon. She is still asleep now at 9:15pm, and has even been through a few changes between me and Daddy. She has woken up a couple of times and cries a bit, but each time she has gone back to sleep. She's actually sleeping in the bed right now which is a great thing- so far we've only gotten her to sleep on top of someone else, cuddling. We're hoping she'll sleep a long long time and get good and rested up, let her little body have a good break, then maybe we can work on the day/night stuff some in the coming days. I imagine it will take a while to get that established again. I just can't express how relieved I am that she has finally had some significant undisturbed sleep- the nurses in this hall are much more lenient with the monitoring, and it is a lot easier on her.

Unfortunately the downside of all this sleep is that it's hard to schedule treatments... the speech pathologist came by again this afternoon to reassess Emma Kate, and she was just passed out! So we missed this opportunity, but we'll try again tomorrow morning. Once she judges Emma Kate ready for it, we'll take her for a swallow study to make sure she can swallow effectively and not aspirate into her airway. I have a feeling she'll pass with flying colors once she is awake and alert enough to engage in it. So for now she's still getting fed through a tube in her intestine.

Sounds like we might get moved out to the general floor sometime tomorrow, but we know how that goes- it may get put off a day or two... it will happen when it happens! If things continue going well and we don't have any setbacks, it sounds like Emma Kate's ENT doctor is estimating we might still have another week or week and a half here before he's ready to let us go. I certainly can't wait to get back home, but I'm not at all anxious to get out of here before we're absolutely ready!

Thanks thanks thanks again to everyone for their continued support and generosity- we can not say enough how much we have appreciated it throughout this ordeal!

What's missing from this picture? Ventilator, heli-ox setup, nitric oxide setup, you get the picture...

Sunday evening

Last night turned out to be a little on the rough side, Mimi and Daddy split the night hours again, and it sounds like about half the time she was sleeping and the other half she was a bit agitated. When I came in this morning, she was awake but not really herself, doing some sort of aimless movements and such, different from what we saw before that we thought was withdrawal. We removed her nasal O2 cannulas and her NG tube, not only whittling down the hardware, but also to see if it would help her settle to have less "junk" in her nose. They think she may be going through "ICU delirium" and have started her on risperdal to try to treat it. She showed this behavior for about 2 or 3 hours before she had finally worn herself out and fell asleep. Plus, along the way they gave her benadryl, and the risperdal should help with sleeping too. After she finally gave in, she slept for about 5 hours or so, and when she woke up it was like Emma Kate was back again! She was acting like herself, although weak and very hoarse, but she answered a few questions for me, which was wonderful. She got a new clonidine patch, her pacer wires were removed, and her central catheter was pulled. She's been doing great even without the oxygen, her O2 saturation is really good. Only a couple times today has she desaturated, and each time she comes right back up again. One time when I came back into the room, she was pushing herself up weakly from her stomach, I asked her if she wanted me to pick her up, and in her tiny little voice she said "yehsa" so I picked her up and we were able to sit in a big chair together. All her remaining lines and wires had to be rearranged, but she fell asleep very comfortably with her head on my shoulder- it was absolutely wonderful to cuddle my girl again! She went through one more awake period this evening and was fidgeting with her blankets and stuffed animals in her bed. She was starting to look a little bit shaky or agitated again, but she actually ended up settling back down after a bit and is sleeping peacefully right now.

The plan for now is to continue weaning her off her precedex- once that is stopped, she'll be off all IV drips, and will just have an occasional IV treatment, everything else will be orally administered. At some point they will decide when to start allowing her to eat some, and there has been some mention of doing a swallow study on her, but no one has discussed it with us yet. Her ENT doctor will be back tomorrow and I'm eager to see what he thinks of her- so far we're really quite surprised at how well she seems to be doing. She is still making noise when she breathes, and she does have the expiratory effort, but she's managed really well even when she has been agitated.

The sad part is that I'm now wearing a mask in her room- my nose has been feeling dry all day, and just tonight the feeling started to extend into the back of my throat... It could very well be all the dry indoor air we've been exposed to for a month now, but I'm worried it could be the beginning of a cold. Seeing how that's all it took to send her spiraling downward to begin with, I'm trying to be overly cautious about protecting her from any possible respiratory illness. That's exactly what she does *not* need right now.

Gretta continues to do well and have her fussy times too, she's a funny little one. It's amazing to me how different she can be from how Emma Kate was as a baby. We'll be calling in tomorrow to get an appointment for her one-month check up, and can't wait to see what her weight is. She has good times and bad with nursing for the last 2 weeks or so, but she certainly doesn't seem to be showing any signs of lacking nutrition, for sure!

Saturday evening

Today has been relatively quiet! Emma Kate was taken off the heli-ox and just put on oxygen through a nasal cannula, which she is tolerating so much better than the mask! She's doing great with her oxygenation still. She's making less noise when she breathes, but when she's awake she still has a significant expiratory effort. She looks really good (still not 100% "normal" though) when she's asleep. They attempted to get a peripheral catheter again today, in an effort to be able to remove the central line that is getting old. They had a hard time getting one- she was a bit of a pin cushion for a while there, again. They did get one in her left arm, but were concerned that it wasn't the greatest or most "secure" access, since they had some trouble with it. It seems to be flushing fine, so hopefully it will be ok. The hard part is that she has to wear a board brace on that arm so she won't damage anything, and it's really heavy for her to move it around now. They started her feeds back slowly through the TP line, and so far she is tolerating it well. They may possibly pull her NG drain and her pacer wires tomorrow if she's still doing well. They're starting to decrease her Precedex again, and should be off it completely by morning if she tolerates the decrease without getting agitated again. We're hoping to get her in a bigger bed tomorrow so that we can cuddle with her in the bed instead of having to try to get her out of it. There's some talk of her being moved out of the ICU sometime early in the week if she continues to do well.

She's been very quiet and sleeping through most of the day, and just this evening has started being a little more awake, she tried and tried to turn onto her belly to sleep, and with the OK of the attending doctor, we let her. She slept comfortably for a little while, but then couldn't get her braced arm in the position she wanted, and she got upset about it. She's got a tiny little squeaky voice tonight, and I still can't tell what she's saying, but it is so sweet to hear her voice!

One other note Greg reminded me about- for any blog readers with kids- if you have children's videos or movies that your kids have outgrown, consider donating them to a hospital- it's so nice to have a bit of a library to select from to help occupy the long hours spent sitting in the bed! Some of the rooms here even still have a VHS player with a DVD player, so consider getting rid of all those old video tapes or DVDs for a good cause!

Saturday morning

First off, I apologize for not updating the last two evenings- things have been a bit hectic! Here's the recap-

Thursday was a pretty good day overall, Emma Kate was doing great with her drug decreases and was pretty mellow all day- she was opening her eyes more and looked more alert, but just kind of laying there quietly. By mid-day, she was off the fentanyl drip, and down considerably on the versed. I can't remember if I already posted this, but she's got a clonidine patch and a fentanyl patch to help stretch things out and work on helping to prevent withdrawal signs. She's had her methadone and adavan doses increased because she had been showing signs suspicious of withdrawal, mostly lots of somewhat random herky-jerky movements with her arms and legs, and the shakes. She's been sweating and yawning too, which can be signs of withdrawal as well. Into the evening, we had another bit of a scare where she started coughing really hard and ended up gagging and spitting up some thick mucous and bile- luckily the nurses were right there over her at the time, so they were able to suction her pretty fast. The cuff on her ET had been deflated a couple days prior in anticipation of extubation, so we were just really scared about aspiration. Despite everyone's efforts to ease our fears, we weren't comfortable leaving her overnight since the nurses can't be in the room looking at her every minute (why not I ask?!?!) So Mimi and Daddy split the night so they could be awake with Emma Kate and also get a little sleep. They replaced her NG tube, which didn't seem to be working well, and apparently there was a bit of a plug in the end of it. They put in a larger diameter tube, and have been running the suction regularly to help keep her stomach empty, but she's just becoming more and more awake and getting a little more agitated, and with 3 tubes sitting in the back of her throat, I am amazed she hasn't been doing more gagging. Overnight she was weaned completely off of her versed and down to minimal amounts of Precedex. She's been getting Zofran for possible nausea, and regular doses of Benedryl to help keep her a little sleepy without depressing her breathing.

Friday morning she was doing well, pretty awake and alert but not agitated. They went ahead and extubated her while she was in a good state for it, and they immediately started treatments with inhaled epinephrine to help reduce the severe laryngeal edema from the ET being in there so long. They also put her on a helium-oxygen mask which provides more laminar air flow than plain oxygen. She made all sorts of coarse noise from her throat, and was having a lot of abdominal push to exhale, which was very reminiscent of the night we brought her to the ER. The doctors were very happy with how she was doing- they feel confident that the majority of the noise she makes (it was a LOT of noise!) is from her laryngeal area, and that should improve significantly within a few days. They are happy with her air movement and don't think her patch is completely collapsing because she's not air trapping and her blood gases have been good, and she sounds like she has good air exchange in her lungs. She's definitely got some collapse though, as she does have a pretty big abdominal push to exhale, but the doctors are comfortable with the extent of it for now.

After a couple hours, they actually let me get her out of the bed and sit with her on my lap in a chair- it was wonderful, and I honestly had forgotten how big she is, and how much she weighs! It's crazy what you seem to forget when you're used to it all the time and then you miss it. She got really agitated in my lap, really wiggly and antsy, and we had to put her back in the bed and start her back on her Precedex drip. It took 3 of us to try to control her hand movements so she wouldn't accidently pull any of her monitoring equipment off or remove her pacer wires, definitely looking like withdrawal signs. She also got a little bolus of fentanyl and that seemed to do the trick. The rest of the day was pretty quiet for her, a couple of times she did wake up a little more and she seemed a little better controlled and less agitated. She has tried to speak a few times, and nearly nothing comes out- what we can hear is just a teeny tiny high-pitched little squeal. It's so hard to have her trying so hard to communicate and we have no clue what she's saying. A couple of times she's also gotten to pointing with her finger, but we can't tell what she's pointing at since she's so shaky with it.

Friday night I got to sit with her for a while, she was awake but very calm, much better with the drug arrangement like they adjusted it. She got a rub-down with lotion, which she desperately needed. She started to cry for a little bit, which was really hard to see- she would inhale deeply and then it was like she was just holding her breath for a long time, then she would push all the air out forcibly. I couldn't tell what she was crying about, and tried to comfort her with cuddling and kisses and talking about all the things she likes back home, the kitties, baby Gretta, baby clothes, movies, etc. Finally she did settle down, and it sounds like she had a pretty good relatively quiet night. Mimi and Daddy split the night again, so that she wouldn't wake up alone, and also to make sure she kept her heli-ox mask on well and didn't pull anything off. They have arm restraints on her, but sometimes it's hard to judge how far she can reach with them.

This morning (Saturday) she is sleeping quietly and is actually breathing much easier- if only she could breath like this when she is awake. How do you get a 2-year old to relax and breathe easily?!?! Her attending doctor was joking with me last night (actually probably talking more seriously than I care to believe) about how toddlers will throw a fit and scream and turn blue and pass out, then they just start breathing easily again, and that's was Emma Kate would likely do if she gets too worked up- just have too hard a time breathing that she would pass out, her body would relax, and she would allow the air to more passively leave her lungs rather than fighting against the partial collapse of the patch. How terrifying is that? Anyhow, she sounds better today- less noise means less edema in her larynx most likely. They've not done rounds this morning, but it sounds like we'll probably take her off the heli-ox today and put her on regular oxygen in it's place, and mostly just giving her time to recuperate and rest. One of her cardiothoracic doctors came to see her this morning and was very pleased with the way she looked. He thinks she'll probably have a few more days here in the PICU then be moved to another ward if it looks unlikely that she'll have to be re-intubated. They'll probably pull her pacer wires tomorrow (I can't wait for those to be out, they're a pain!). So for today we're just trying to keep her comfortable and calm, she'll have several breathing treatments in addition to more IV steroids, and hopefully it will be quiet!

I wanted to mention how grateful we are for all the support our friends and family have given us. It has been wonderful to know how many people we have out there that care about our little family. We can't express enough how thankful we are to everyone. The people here have been so great as well- so many are supportive of families here and really work to reduce the stress and issues families have to deal with in a situation like this. The Ronald McDonald folks have been incredible as well, not only giving us a nice, very inexpensive place to sleep, but they have dinners donated to them every single night. A lot of donations have come from individuals and churches, college sororities, and restaurants. The local McDonald's donates dinner every Monday night, and a few nights ago, a great steak dinner was donated by TGIFridays. They even had people cooking a serious Thanksgiving meal all afternoon on Thursday. There have been several gifts given to Emma Kate, and I know she will love and appreciate each one when she is stronger. This experience has made us so thankful for the generosity of family, friends, and strangers, and has made me realize how important it is to give and support others! We hope to be able to give back in the future, and to help others who are in difficult situations.